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lunarruna

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Hello, I am the wife and caregiver of a 42 yr old man with ALS, diagnosed August 2004. I thought I would offer a tip on something that works well for us, and then ask for some help/support.
First, my husband has found tremendous relief from marijuana, which is legal for medical purposes here in Montana USA. We started it to relieve muscle spasticity, but it also is great for reducing saliva, and has analgesic properties. I have a .pdf file of a research article about using MJ for ALS if anyone wants it I can email it. Because we dont want to compromise his lungs by smoking, we use an herbal 'vaporizer' and he sips on the vapors about 4-5 x/day. (By the way, he was never a MJ smoker before ALS!) He also takes baclofen for his spasticity, but the MJ is far superior.
Now, for our latest challenge. His hands/arms went first, then legs and he got wheelchair last summer, now pretty immobile in a lift recliner chair and he doesnt ever want to go out anymore because he is so uncomfortable in the wheelchair. this winter he got a feeding tube, and now over past 4 months has totally lost speech. This part has been devestating for us. So far we had been an excellent 'team' and dealt with all these horrible trials together with as positive an attitude as we could. I was thankful for his great mindset. Well, now the anger (rightfully so) seems to be surfacing, brought about by frustration with communication difficulties. He tends to blame all the miscommunication/misunderstandings on me, and lashes out a lot--I am just beside myself and feel so unappreciated for my efforts. He has never been an angry man. He has a speech device that he types into (with infrared mouse pointer on glasses), but it is slow to get a message across and of course cant use when he is laying down to bed or other stressful times (toilet). We use a bunch of eye blinks for a few codes, but mostly he says he just wants me to ask him questions and he will nod yes or no (for now while he can!). So I ask a million questions and sometimes okay but sometimes cant hit the nail on the head and the frustration builds for us both. This seems like so much pressure on me, I have to think of all the possible questions and feel like I fail so often. Sometimes he just shakes his head and gives up, so an itch gets left unscratched or whatever.
I guess I would like to know any advice for this situation. Maybe it is as simple as my solution yesterday which was to go outside and smash a glass on our deck to unload stress.
Thanks and good to have found your site--sounds like some great people here. We are right on the Canada border south of Regina, SK (middle of nowhere).
Beth
 
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Al

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Hi Beth and welcome. Sorry you have to be here. I can understand your anger and frustration. I have a list of questions and phrases that were recommended to me for voice banking. You might be able to put some of them in your speechwriter in your voice that may help with day to day things. If you'd like them send me an address through a Private Message or at [email protected]. There are 15 pages of phrases and you can pick out what you need. This is a very miserable disease and it is easy to get mad as heck and want to throw things. Just don't throw the good china or crystal. Costs too much to replace. I have a friend that used to get a 2x6 piece of wood and bang 3 inch nails in it. He'd just start them and when he got mad he'd go out and drive them in. Turn the board over and knock em out. Kind of like the kids peg toy we used to have. Very therapeutic and easier on the glass ware. Hope this helps. Take it a day at a time Beth.
 

Jane

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communication

Hello Beth, loss of speech seems to be the most difficult to cope with. Very frustrating for both PALS and CALS.
My sister also found the communication device slow.
One solution we use every day is a picture board. I cut out pictures of some of the things that she asks every day and mounted them on bristol board. for example a picture of a toilet (bet you can figure out that one!) Picture of a coat or sweater to indicate to hot or cold. Glass of water to cover thirst. You get the idea just use pictures that work for you and spouse.
Could not find a picture to indicate the need to have bi pap mask adjusted. Ended up using a goalie mask picture.
Hope this is of some help, take care
Jane

Vacuum picture works well to indicate the need for suctioning
 

marlo

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Jane said:
Hello Beth, loss of speech seems to be the most difficult to cope with. Very frustrating for both PALS and CALS.
My sister also found the communication device slow.
One solution we use every day is a picture board. I cut out pictures of some of the things that she asks every day and mounted them on bristol board. for example a picture of a toilet (bet you can figure out that one!) Picture of a coat or sweater to indicate to hot or cold. Glass of water to cover thirst. You get the idea just use pictures that work for you and spouse.
Could not find a picture to indicate the need to have bi pap mask adjusted. Ended up using a goalie mask picture.
Hope this is of some help, take care
Jane

Vacuum picture works well to indicate the need for suctioning
Hello Jane,
I just had to compliment you on your great suggestions,, i'm not to that point yet with my ALS, but will keep it in mind farther down the road.

Love and Prayers
Marlo
 

lunarruna

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Thanks Al and Jane for your advice. I had been looking at the picture boards that are sold online, but they are so generic--great idea to make one...I have already started. It is a testament to the complexity and subtlies of our spoken language how hard it is to capture everything!
I have felt better about things in general since discovering this forum and just knowing that you all are out there. Peace to all, Beth
 

Juanita

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Dear Beth,

I read your post & felt like you were telling my story, We have alot in common.
My hubby has als & is on a vent & has a feeding tube & trach. Hes a quad now, 3 short years ago he was walking. This als is the worst! We have so much trouble with communication, I read his lips (not very well) And I go through the whole alphabet for each letter, Talk about confusing...
I cry & he gets mad when i can't understand what hes trying so hard to tell me.
We have been together 31 years & ran a repair bussiness together for 20 of those years we are best friends. I "really" do understand your frustration, Just wanted you to know you are not alone, Hugs Juanita
 

TBear

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Hi Juanita:
I know well the position that you are in now as I did the same 5 short years ago. It was never a problem knowing that my wife needed something... her eyes still worked. But, I found that usng a heirarchy of requests... "do you need to go to the bathroom"? was always first. After that each word was started as either a vowel or a consonant... and it went from there. eventually within a few seconds we would unravel the mystery!
Good Luck
T.
 

Juanita

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hi

Thank you t.bear,
This is an aweful diesease, Garys a great husband & this illness has made him mean sometimes, Not that I can blame him, If it takes 4 min. for me to know he has an itch..
The other day i had just gave him his feeding & his tummy was full & he was trying to tell me to move his hand off of his tummy (it was hurting) I finally got it. And then afterwards I cried, (not where he could see me)This is so unfair to him.
:(
Thank you for your encouraging words:)
Juanita
 

lunarruna

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Juanita...
I am sorry we are in the same boat, but glad to have heard your story. I feel very alone in this in all in terms of family and friends, most who live far away. It's really not the loss of communication that is the worst--as you know, it is the accompanying anger. I spend a portion of each day crying inthe bathroom to release the hurt.
I would like to know more about your (or anyone's) handling of relief caregivers, given how hard it is to communicate. I am getting into a deep trench whereby I wont leave my husband with anyone except briefly. I know this will not be sustainable or I will burn in. For now, I get nurse's aides for 2 hrs, 3 days a week is all, and my husband makes sure all is set so they basically dont have to do much except be there in case he chokes or something. They do ROM exercises is all. He is not yet needing any bipap or breathing help, and we only have to get up 2 or so times a night, so it is okay (kind of) for now
........but when things get worse, I fear how I could ever explain to others the extremely complicated and subtle 'language.' I just really dont ever want to leave him.
Any thoughts? What do y'all do?
Beth
 

Jane

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communication

Hello everyone, speech is the most difficult and cruel of all the tricks in the ALS bag. We dealt with it by creating an alphabet board for spelling out things ( slow and frustrating for everyone) but it did work. We also created a picture board each picture represented an specific need.
On our board the first square (use bristol board and make squares fairly large for easier reading) had no picture only large letters S.O.B. (short of breath), next one was a picture of a vacuum underneath was written the word suction and then a toilet (that one is pretty self explanatory).
We also had pictures to indicate need for more or less blankets, tv. lights, legs (indicated need to have legs massaged). etc. I am sure you get the picture.
I know it is not a perfect answer but it did help us.
I hope this is of some help to you. Remember you are not alone in this many people are coping with all these same things. Draw on their strength and prayers.
take care Jane
 

Juanita

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Beth,

Hi Beth,
I do also cry in the bathroom, No one ever knows.
I get out once a week for an hour & 1/2 for grocery shopping & post office.
Gary only likes me to take care of him. When I get home half of the times hes been crying or mad.
So I don't like to go out, I know its not good to stay here all of the time.
His 3 sisters take turns watching him. But one broke her arm, the other is so depressed, the other is a nurse & only a nurse, She says she can't be a sister.
They help turn him for his bath everyday & help get him up for a couple of hours everyday, They take turns. I am so grateful for their help, But sometimes the are way to overbearing! They are very strong women & I am learning to be strong or I will get run over like a pancake! lol
I use to be such a push over, Not anymore! This is our home..
Garys been on a vent since feb. 2005 And been home on a vent since march 2005 Its been very hard but, everyday I thank the lord hes still here. We are sweethearts.
I wish I could be of more help to you, I have not figured "it" out yet..
I know where I've been, not for sure whats next. But I do know I will fight till the end of ALS!
Hugs,
Juanita:)
 

dana

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Juanita,
My dad has been on a vent since Feb. 06 and came home with it on March 06. We are adjusting each day, and are finally feeling comfortable with it. My mom goes out about twice a week just to keep her sanity. She goes and has lunch with some girlfriends or will do errands in town. Dad is pretty good with having her go as long as one of us kids are there. We also have a helper that we pay to come and hang out too so mom can sleep in occassionally, go swim in her pool, or clean house. We have nurses that come on at night so mom can sleep. I am thankful for all of the help because I know not everyone could afford it. Even though my mom gets to go out twice a week for a few hours, it is still hard on her. It is not normal for her to stay at home this much, and so we encourage her to get out a little. Sometimes easier said than done though. My dad is pretty laid back and understanding. It just sucks so bad to see him in the shape that he is. We try to stay positive for his sake though and trust that God is with us and taking care of us. How is your husband's cognitive thinking? Dad's is really bad now.
Dana
 

TBear

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Tough One Juanita!
We all need to deal with this individually but respite is necesary to recharge the batteries. I was getting about 8 hours of help a day through various organizations (Community Access to Care and Home Care) 5 days a week. I was on my own for the weekends (except I have 3 daughters to help). Often, shopping trips were respite and of course we here have respite care through the hospitals. There was crying in the bathroom at our house but not by me... usually whoever was in there after me!
Cheers

T.
 

Juanita

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hi dana,

My husbands thinking is really great! Hes very smart & knows whats going on on all of the time.
This is a horrible illness, Gary gets frustrated alot, But very understandable.
Sometimes I don't understand his reasoning, But he alllways lets me know what he means, Otherwords , He puts alot of time time and effort to get his point across.
And after I see his point of view, He was right.
Hugs to you,
juanita:)
 

Juanita

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Hi T.Bear,

Thank you! You are a kind soul:-D
One day "I hope" there will be a cure for ALS!
What a DAY THAT WILL BE!
Hugs to you,
Juanita:-D
 
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